Your Voices: The Borgia's Story

The moment you find out you're having your first child, the overwhelming excitement growsbecause you're that much closer to the life you had envisioned for your family. Fast forward 34 weeks and you're in the delivery room having an urgent cesarean section and your newborn is swept off to the NICU. This was only the beginning of how our story began.

Luca is a name derived from the word "light." When seeing his pictures, I knew he was just that: the light of my world. Seeing Luca for the first time taught me what true unconditional love is. When you meet your tiny little 2 pound 10 ounce baby and the doctors tell you they are calling genetics to see your child, you begin to wonder why they would do such a thing when your amniocentesis results stated your little boy was a genetically normal male. The geneticist used multiple diagnoses to rule out, but there four words that we didn't know at that moment would be changing our lives and life we envisioned forever: Cornelia de Lange Syndrome. This is a conversation no parent wants to have.

Four months after Luca was born, we were ready to contact the CdLS Foundation to utilize the resources they had for parents like us. If we knew earlier what we found out then, we would have done this much sooner!

The Foundation helped us to get in contact with other families who had been in our shoes to help us release much of what we had been holding inside.
The Foundation has helped us to move forward and raise our Luca as the little boy that he is. They helped us to become more comfortable with the diagnosis. They provided us not only with personal support, but had resources available for our son's doctors to help provide him the best care possible.

We learn more and more everyday from our Luca but most importantly, to stop and smell the roses. We all should appreciate these children for uniqueness and beauty they hold within. Live in the moment and enjoy every second and every smile. Lastly, things may not be what you expect, but that doesn't mean its not going to be an amazing ride!